May 23

Botox Injections 

I had my Botox Injections last Tuesday, and they couldn’t have come soon enough!

I was in so much pain with my eye, neck and head that I was having trouble sleeping.

I thought you might like to see the injection points that I have, so here are some pictures to demonstrate.

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I have the injections shown at, A, B, C, D and H. These are for my eye, which closes slowly over time and blinks. My eye looks really sunken and dark at the moment, and keeps weeping which makes it very sore along with the pain it already gives me.

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I also have an injection in my left cheek, similar area as shown in the above photograph.

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Then I have an injection in the Splenius Capitus muscle, and I get the full 100 units. This is for my Cervical Dystonia, which makes my neck spasm and move making it very painful. I regularly have to hold my neck with my hand, and wear a scarf to help pull my neck up into place when needed as well.

I have to use a neck cushion while sitting on the sofa, as I cannot hold my head up all the time. I also have to use a neck cushion to go to sleep, I have needed to do this since March 2012 when my neck got really bad!

All these injections, are given every three months. They are a life saver, they make such a difference to my daily life.

Pas always, thanks for reading and I hope some of the information was valuable to you 😊

 

 

May 23

FMD and the difference between other movement disorders

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Functional Movement Disorder has many overlapping symptoms of other movement disorders, such as Dystonia, MS, Parkinson’s, Lyme Disease, Lupus, Chorea, and many, many other movement disorders.

The difference being that whilst these others are an organic brain disorder, then some may possibly shorten life.
The functional movement disorder is not, it is classed as psychological or psychogenic as some name it, but it is not life shortening.

FMD sufferers have problems where the messages to and from the brain start getting mixed up, as they fire across the neurons and synapses in the brain. Due to the bodies Central Nervous System “wiring”, which is the signal sending and receiving lines. The Central Nervous System suddenly has a disconnection, and the persons body stops moving and functioning correctly.

It is not totally understood why this happens, but this is the part spoken about when the “brain breaks!”.

The “brain break” happens when a person has gone through a traumatic event at some time in their past, but at that time their brain was not able to process all the upsetting information so hid it away in the back of the brain.
Until a time where the person is back to a stable happy life, then the brain takes it upon itself to take out all these surpressed feelings to start and unravel and deal with them.

Well the brain thinks you are happy again, so you can take it now yes?
No!
It’s at this point where in effect the “brain break” happens, making the brain stop working properly and misfiring its bodily commands. When it causes havoc with the central nervous system, sending the signals to and from the brain incorrectly.

We can have so much going on classed as functional, yet some sufferers may still have some actual real problems.
Only we find that once we are labelled as functional, all the Doctors class every problem we have as “Functional”! It is incredibly upsetting, and can take many more years for sufferers to be listened to, and to get correct diagnosis’ for other problems.

I myself alongside my FMD have Dystonia Blepharospasm, Hemifacial Spasms and Cervical Dystonia. I just had my Botox injections last week, so am looking forward to a bit of relief in the coming days and weeks.

I also have a lot of back problems, where I’ve had many steroid facet joint injections, along with a steroid epidural back injection. These are painful, but none have worked for long, the steroid doesn’t seem to work for me.

I hope this answers some questions.

Thank you 😊.

May 13

Check out what Functional Movement Disorder is 😀

Hi,

If you want to know more about the functional part of my disorder.

You can check out all the information at my other website.

www.functionalmovementdisorder.com

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Thanks 😀

Mar 21

Mobility Scooters And Insensitive Car Drivers!

  
People must think that a disabled person popping onto a mobility scooter, and collecting the kids from school must be so easy!

What they don’t factor in, is the getting it out of the garage or shed, and back into the garage or shed on the return. It kills my back from stretching to do the locks, just getting in and out is a trial in itself! 

Plus then there are the rude insensitive car drivers, beeping their horns at you and showing the finger! 

I own a scooter that is allowed on the road, it is big, goes at ten miles an hour and I have tax discs. I even have the paperwork, from the DVLC with its registration number on. The paperwork for if I want to sell it on, so yes, I’m definitely allowed to drive my mobility scooter on the road!

I NEED IT because I am disabled! 

But when you get beeped at, it can make you jump. One jump can turn the steering, one turn can cause an accident. That accident can cause all sorts of havoc!

All I’m asking is that you show more thought, care and understanding for the disabled who have to use aids to get about. Just like you use a car to get about!?

You never know if you may become disabled one day, and need a mobility scooter too?

Umm and what if, it was all because you beeped a mobility scooter?  That gave them a shock, and made them jump? That one jump, that turned the steering. That one turn that caused an accident, that accident that caused all sorts of havoc? 

Just what if? 

If you were in that accident?

If your partner were in that accident?

Your child were in that accident?

All because you beeped a poor mobility scooter driver, who depends on that scooter to get her to where she needs to be?

So THINK!

What if……….?

Thanks as always for reading folks X.

Feb 28

Health Services Need To Up Their Game For Neurological Patients! 

  
I saw this on a news site I was reading, and I decided I must share.

For many years now, I have found myself stuck in a merry go round. Sent from one hospital to another, for all the different appointments for treatments I need for my ongoing problems. 

http://www.bbc.co.uk/news/health-35660467

Hopefully now this report has been done, there may be some better formats put together. Which may provide a more guided help for neurological patients, and give them better more consistent and thoughtful care. 

Try to put together their care systems in one hospital, rather than them having to travel all over and retell their stories and problems over and over again! 

The way it is at the moment is neither good for the patient, or the Drs trying to look after them. As a patient is treated in many different places, it means that their is no consistency of notes, to keep on top of what is going on with the patient 

Not all hospitals systems connect to other hospitals, and the follow up report letters go to the patients local GP Dr. So it is down to the patient to have to keep the other hospitals up to date, and honestly it’s hard work remembering everything.

As a neurological patient, we have memory problems already. So expecting us to be able to pass on information during our appointments at another hospital, can be very trying when you are there in the moment only thinking about the reason you are there for that appointment!

So fingers crossed that this report, gets the neurological system sorted out for better care treatment for future neurological patients. 

Thanks for reading, as always folks 🙂 X

Jan 11

Back Injections – Ouch :(

  
Today I spent half the day in Tameside Hospital. 

Once I was dropped off by my partner, I got booked in by a delightfully rude woman who must love her job! Then waited to be taken to the ward. 

After filling in a “few” sheets of paper work, and sat on my mobility scooter, forced to watch daytime television. I was eventually called and shown to the ward (by a very nice pleasant male nurse), about half an hour after the requested arrival time! 

I think they just ask everyone to arrive, all at the same time. I was to arrive for 10am, though of course we always turn up early so I was there at 9.15am.

In my cubicle I got changed into a delightful, off the shoulder backless little nightie number. I know, you are probably all jealous. But not everybody get the chance to wear such lovely nighties, and just for a twist, I put mine on backwards too! Well hey, it was by choice, honest 😉

I then covered my posterior, with the beautiful furry leopard dressing gown the kids got me for Christmas 😀

Then started the next waiting game. Once I had been brought to the ward and shown my cubicle with bed, and a nightie and blanket I was left to get changed. 

Nobody came to check on me, or inform me of when I would be going to theatre. They didn’t even open my curtains, I waited over half an hour! Then I got one of my walking sticks, and pulled a curtain back so I could be seen that I was there! 

Communication doesn’t take much, but can mean a lot. Just an acknowledgement from a nurse that I was there, would have been enough. I didn’t get collected to go down to theatre, until just after 12 noon.

In the outer room before going into the theatre, I had a cannular put into my left hand. It took ages, as the nurse couldn’t find a vein so he was having to flick my hand with two fingers to make a vein rise up. It hurt, and I knew there would be bruising tomorrow. Never mind tomorrow, it’s already bruised now 🙁

Then off with the dressing gown, and pushed on through the next set of doors. Ready and waiting was my surgeon, to do the injection for my back and leg pain.

Only to my surprise he spoke about injecting the facets in between the back bones, where I have all the problems of degenerating discs, prolapses and bulging discs.

Facet joints are small joints at each segment of the spine that provide stability and help guide motion. Facet joints can become painful due to arthritis, back injury, or mechanical stress. A facet joint injection delivers a steroid medication which anesthetizes the joints and blocks the pain.

Well that’s the explaination, so you can understand more about the procedure I had done. 

I was not expecting these injections, I had four of them. It was very painful, the surgeon said I did brilliant. Though I did cry by the end, I did well holding back the tears that long! 🙁 

The surgeon had mentioned about doing the facet joints, and the epidural injections all at the same time. But he was concerned in case my stats changed, and if my body couldn’t take it.

I asked him to please, just do them all and get it over with. As he was doing the procedure he was great, he was totally on top of his game. Watching all monitors, and giving orders and requests to his staff members. He knew I was going through a lot of pain, kept checking I was okay. I wanted it done, I kept saying yes.

Unfortunately by the end of the third injection I could no longer hold my tears back, and j was crying. I felt ashamed of myself! I put up with pain EVERY DAY! WHATS A BIT MORE PAIN WHEN ITS TO DO GOOD? 🙁

The surgeon decided that once the facet joint injections were done, he wanted to finish and not do the epidural spinal injection. He said I’d gone through enough, he didn’t want to put me through more. That they would arrange my epidural steroid injection for another day, and would send out the appointment by letter.

They very gently helped me transfer back to the bed I had been wheeled in on from the ward, covered me with a blanket and put up the sides. 

I felt sick, the pain was awful. My back hurt more than when I came in, but I expected that. I was just so pleased I hadn’t suffered an epileptic attack, whether I have epilepsy or non epileptic attack disorder. Either are scary, and I didn’t need that on top of the pain. Plus I only spasmed a few times, so my neurological disorders all seemed to behave their selves. For once! 😀

When back on the ward the nurse came and took my blood pressure and stats, she asked about the pain and what sort of level I would put it at. I replied that I live with pain everyday, that it was a little worse and uncomfortable. She gave me number ratings, and said she wouldn’t consider letting me home, until I got to 2 or below. 

She got me a coffee and toast, I’d had nothing to drink for hours and hadn’t eaten since 7pm the day before.

Eventually I could feel the pain lessening, the injections were working! 

The nurse eventually allowed me to leave, and removed the wire finger monitor for my heart and the cannular from my hand. Oops blood spurted all over, my hand was covered. I might not have wanted to give them a vein, but apparently I was a little bleeder 😉 lol 

I’d been texting my partner, and was relieved to let him know he could set off to collect me at last. 

I was so glad to see him, and even happier once home. 

I was so tired, I actually went to bed as soon as we got in. He went to make us coffee, but I was practically asleep by the time he had made it.

He left me to sleep, and when I woke up it was five o’clock, tablet time! It’s as if my body knows all the tablet times now 🙂

I was in a lot of pain. It is now 10pm in the evening, I’m still in pain. It can take a couple of days for it all to settle, after all I’ve had needles inserted and then steroid medication pushed through into joints not used to any of this.

I am hoping for a good nights sleep tonight, and a new slightly less painful day tomorrow.

I hope my writings both interest, and give you insight to the things that movement sufferers can live through.

Take care folks, and as always thanks for reading 🙂

Nov 30

And So Life Carrys On!

  
I am sat up in bed, with so much pain in my back that I am beyond crying. 

The pain honestly feels like I am pregnant, everyday, with the weight being pulled down through my back. As if I am having labour pains! 

My hips feel as if they have dropped, again the pains can be excruciating. This is having a massive effect on my ability to move. 

Even last night, my partner woke me, saying I was crying in my sleep. Reason? Once awake, I was in agony from my body pains! 

Saturday I had awoke, and I really didn’t feel well. I had of course all my usual problems and pains, but I just didn’t feel right. 

Unfortunately by late afternoon, I had been sat on the sofa downstairs reading from my iPad. When my head started dropping, I thought I was tired but wanted to finish what I was reading.

My partner had obviously been watching, as he said to me that wouldn’t it be better to put my iPad away and give my eyes a rest? I replied I was reading, I wanted to finish it. My head had continued to keep dropping. Not something I always notice, as I have them quite often. Sometimes they are very small drops, others are large and can nearly topple me over with the weight of my head and the way I am stood when my head drops. I usually make to sit down, and do rest my eyes. I’m not totally sure what these are, and it’s never come up in a conversation with any of my Doctors.

Well back to this Saturday just passed, as I was sat on the sofa. My partner said again to put my iPad down, I don’t remember too much following hearing him say that. It seems I drifted in and out, as I was having a seizure, he said I just went! I was out for a while, then he said I went to sleep. He knew this, because I started to snore! 

  
He kept his eye on me, and when I came round (he had been cooking the tea) said he would put my tea aside for me. I was in no fit state to eat, I wasn’t even back round properly yet.

I saw no reason for this seizure, no upset, no stress. I had done a bit of drawing with some new brush pens I’d got, and a small sketch pad. I had enjoyed being able to draw a little, and colouring and shading. Though the pens are nothing like a brush! If you are interested in looking at my artworks, they are on Facebook page Andrea’s Arts, just search 🙂 

I had then been reading up and researching about neurological problems, there had been something about a possible cure for Alzheimer’s. Any time you read something about a cure or something to help a neurological disorder, is exciting and can mean possibility of finding help for other disorders. It had been this which I was reading as my head started to drop, but still no reason for a seizure. I hadn’t been on my iPad for very long, so j don’t think the back light from the screen was a factor in my seizure either!?

This all just enforces my belief, that seizures are not always set off by a reason. I’m not saying g that they can’t be, just not all the time.

So I had a bad day Saturday, had to take it easy yesterday Sunday. Now I’m feeling so tired from waking in the night, with crying in my sleep, the pain in all my body. Waking most nights for the toilet, and with a constant dry mouth and breathing problems needing to take sips to wet my mouth and use my inhalers for my chest.

There are times it all gets a bit too much!

I am so tired, I just want to go back to sleep 😴💤

Catch you later folks, and thanks as always for reading X.

Nov 07

I Had A Seizure But Never Knew! :( 

I woke this morning with terrible pain in my head, so painful I couldn’t think straight.

Then my partner told me I’d had a seizure about 5.30am, and did I remember? I didn’t!

I’m not getting better, I’m getting worse. I cried, I had tears streaming down my face. I’m told I have NEAD Non Epileptic Attack Disorder, which is supposed to be seizures due to psychological reasons. 

If I’m having seizures in the night, without any knowledge. How can that be psychological? We have tried to discuss with my neurology consultants before, that we believe I actually also have Epilepsy. Though the only way to get Epilepsy properly diagnosed, is to be wired up to a machine that will try to catch the electrical signals happening in your head as the seizure happens.

Trouble is actually being able to catch you having a seizure, whilst wired up for the collection of information. The consultants as far as I believe, do not want to pay for me to have the testing done. It would mean going into hospital, being wired up and hopefully catching me have a seizure to test the electrical responses. There is no telling how long this may take, a day, two days, or a week? 

So if taken into hospital for a week, wired up but not having a seizure. Then the time is wasted, and that hospital bed costs money. 

Which means I’m left being ill, and my partner having to look after me as I feel like an invalid following these nasty attacks.

He made me a lovely omelet for lunch, and put “A” on it with sauce. It made me smile 🙂 

  
Whether Epileptic or Non Epileptic, I really would like to know for sure and get the correct treatment. I am left feeling so very ill, with head pains so terrible I can’t take it much more. Even hours later, my head is still hurting really bad. I don’t know what to do?

All I know is I’m laid up in bed, on a Saturday. When I should be with my family, but they are all downstairs. I feel weak, in pain, but the worst thing? The upset that I feel of not knowing, not bring in control of my own life.

Plus on top of all this, my leg spasms are killing and my back too. 

I feel I’m just left to cope on my own 🙁
Sorry, not a very happy post but then life isn’t always happy is it 😢

Thanks for reading folks X.

Oct 21

I Wish….

  I wish I was here, in a mystical land.

Where no pains exist, from feet up to hands.

Where there is only laugher, and joy to be had.

A place I can live, where there’s nothing that’s bad!

 © Dystonia & Functional Movement Disorder Sufferer

Oct 02

Tired!

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I have no energy today, it has not been a good week. I have had two seizures and ongoing spasms throughout the week, which leaves me feeling extremely tired and very weak.

After a seizure, I find I really need to sleep. It is as if my head needs to repair, but I have to lay down I don’t have a choice.

Here is some information on how to look after a person having a seizure, and most important is that you don’t act scared. Just stay calm and as the seizure stops, tell the person they are not alone and they are safe.

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I desperately wanted to put the back up on this site that I have, it is just a month or so short of the first year I started blogging. I am thinking I can put all those posts back on, then write how I lost my site and everything with it. Then I will restart from there, it is a great shame, but could also be a good way of moving forward as things have changed so much.

Well I need to rest, nothing new there then as I am always fatigued!

Catch you later folks 🙂

 

 

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